Narcolepsy changed my journey, but didn’t take my ability to keep moving
My success doesn’t have to look like everyone else’s version of it
Written by |
When people hear narcolepsy with cataplexy, they often picture a life limited by exhaustion and uncertainty. The reality is that this condition has taken away things many people may take for granted, challenged my independence, and forced me to rethink how I live each day. But it’s never defined who I am, and some of my greatest accomplishments have come from refusing to let it determine my future.
That doesn’t mean it’s been easy. Living with narcolepsy means managing overwhelming daytime sleepiness, disrupted nighttime sleep, vivid dreams, sleep paralysis, and cataplexy, which is the sudden loss of muscle control triggered by strong emotions. Everyday activities often require planning and flexibility.
Stumbling my way to victory
Because of my symptoms, I can no longer drive. I’ve had severe cataplexy, including status cataplecticus, along with medical crises and hospitalizations that tested both my body and my resolve.
Rachel Nesmith holds up her 4-month old baby, Savannah Harrison, beside her husband, Kerry, before being wheeled off to surgery. (Courtesy of Rachel Nesmith)
Yet despite these challenges, I have built a life I love. One of the most important lessons narcolepsy taught me is that success doesn’t have to look like everyone else’s version of it. Sometimes it means adapting, accepting support, and continuing to pursue goals even when the path is more difficult.
One of my greatest victories has been in becoming a patient advocate. Over the years, I’ve shared my story through articles, podcasts, social media, and speaking engagements. What began as a desire to raise awareness grew into a mission. By helping others understand narcolepsy, cataplexy, and excessive daytime sleepiness, I hope to make life a little less isolating for those facing similar challenges. That gives purpose to every struggle I’ve endured.
I’ve also helped build communities for people living with narcolepsy and idiopathic hypersomnia. Through PWN4PWN’s NapChat and Project Sleep’s Rising Voices, I’ve connected with countless people who understand the daily realities of these conditions. These communities remind me that we are stronger together.
Living my best (sleepy) life
Creativity is another way I’ve chosen to live my best life. I’ve always loved music, songwriting, and performing. Narcolepsy may affect my energy, but it has never diminished my passion for creating. Whether I’m writing lyrics, recording music, or developing my Sleepy American superhero persona, creativity helps me turn difficult experiences into something meaningful.
In many ways, Sleepy American embodies my intense passionate drive to improve patients’ lives. Superheroes aren’t people without weaknesses; they’re people who find ways to overcome them. Narcolepsy is part of my story, but it isn’t the whole story.
I’m also proud of the progress I’ve made with my health. For the past 2 1/2 years, I’ve participated in a clinical trial for Eli Lilly’s retatrutide and have joyfully lost more than 70 pounds. That achievement wasn’t just about a number on a scale; it was about improving my health, increasing my confidence, and proving that positive change is possible even with a chronic neurological condition.
Perhaps my greatest accomplishment, however, has been in maintaining hope. Narcolepsy has affected my career, relationships, and daily routines. It has led to missed events, canceled plans, and a greater reliance on others than I would prefer. But it has also taught me resilience, empathy, and the value of celebrating small victories. It has shown me that strength is not about doing everything alone, but about continuing to move forward, despite the obstacles.
My life may not look exactly as I imagined it would years ago, but it is rich with purpose, creativity, friendship, love, and hope. Narcolepsy changed the course of my journey, but it never took away my ability to dream, to fight for others, or to keep moving forward.
If my story proves anything, it’s that resilience can grow in the hardest places, and that even in the face of uncertainty, there is always reason to believe in a brighter tomorrow.
Note: Narcolepsy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Narcolepsy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to narcolepsy.
Leave a comment
Fill in the required fields to post. Your email address will not be published.